Feeling a bit lost

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Hi 

Have joined this group (rather not be here, but dont have a choice do we?) for a bit of advice please.

My husband was diagnosed with GBM4 last July, so almost a year since craniotomy, radiotherapy and chemotherapy. He has been through such a lot with side effects to steroids and to the chemo (low platelets, high blood sugar). He declined any more treatment after that. His oncologist agreed and as such passed us on to palliative care. This has been very good.

However, he is now bedbound (hospital bed in the living room), because he has lost the use of his right leg and arm completely. He also has carers in twice a day to help with personal care. He feels he is being a burden and cant wait for it all to end, as he puts it. Naturally, I am devastated. The worst thing so far is that on his 'down' days which get more frequent, I just dont know what to talk to him about. He isnt one for going over emotions and memories and has little interest in the world around him. The exceptions are our two daughters, grandaughter and grandson, but even then he can only see them for about an hour before he is wiped out. How can I make his last few weeks more bearable? He watches TV, but has difficulty using an ipad or his mobile phone, because of his lack of dexterity. 

Sorry I have gone on for so long, but I am doing all I can for him (he says too much), but sometimes just cant seem to get it right.

Any advice gratefully received,

Thanks,

Llamalover xx

  • Hi , have been looking through some of your posts in the other groups and I see you have been receiving some great support, this is what the Community does best.

    You can only do what you can. It’s such a hard time for you and as I am the one with the incurable cancer I can only scratch the surface as to what it’s like to be the person sitting beside the bed. I have been on my journey for 22 years and what I put my wife Fiona though was so challenging, not by my making, just the cancer journey that can develop.

    I just asked her what advise she can give, she said the main thing that helped her weather the storm was talking with others and especially getting cancer carers specific support so she reminded me that we both received great support from our local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.

    Up where we stay in the Highlands people will do a 4hr round trip just to visit the centre, this is how helpful their support is.

    As always Macmillan Support Services is available on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week. This service provides lots of cancer information, support, financial guidance or just a listening ear.

    I have not brought much to the table for you but just wanted to identify that there are many people on the Community around to listen and support as best as they can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Highlander,

    Thank you for reading my post. It was really helpful to read about the various people to contact.

    We have excellent support from our Macmillan Nurse and also have had emotional support and relaxation sessions from the local hospice, via the phone. We have a Maggie's near us (Nottingham) and I think it it starting to open its services up. I may have to give them a try, although again it would be via the phone or video link, because my husband cant travel, except in an ambulance.

    We have only been on this 'journey' for a year and it has been the longest year of our lives. Everything seemed quite positive to start with although we knew the prognosis was only 1 year to 18 months, so think time is limited.

    My husband is quite down today. I have just been in the garden and he seemed ok, but has just really snapped at me, saying I don't take care of him. It really hurts but I know that his mood swings are all part of the horrible disease. He does seem a bit more interested in the outer world, is a fan of motor sport, cricket and tennis so is able at least to watch these on TV. 

    He will be so pleasant to other people, carers and nurses etc, that I end up feeling annoyed with him. I know I shouldn't but I just have to walk away. 

    The online community is excellent, don't know where I would be without it really!

    I find I can type things down, that I can't actually say to people, or I would end up in floods of tears!

    Its all so unfair for my husband, you and everyone in this community!

    Thanks again,

    Llamalover xx

  • Hi again , yes it’s all so unfair to ever single person involved in a cancer journey, it is what it is and we have navigate this as best as we can….. there are often many ‘down’ times but it’s grasping the up times and enjoying them as best as we can.

    I mentioned Maggie’s for you….. not necessarily your husband. My wife Fiona said the support staff at Maggie’s brought a different prospective to the table compared to our Macmillan Nurse teams as their focus is often treatment based and the time available to ‘unpack’’ this invisible ruck sack we are given that just continually collects stuff is limited ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi,

    I know what you mean about the Macmillan nurse, she is very good, but definitely gives treatment based support as opposed to any other. She has arranged the emotional support and relaxation sessions for us though and always listens to any questions we might ask her and gives her advice.

    I have been advised to contact Maggie's before, but probably misunderstood that I could go on my own. I think I will see what I can arrange.

    Think I will lose my rucksack somewhere too!

    Thanks again,

    LLamalover xx

  • ….. even although I am over 5 years out from treatment my rucksack has Stilton be taken off and rummage through Smirk

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Don't delve too deeply, you might find something unpleasant lurking there.....hopefully not though!

    LLamalover x